Some days the stories are adorable, some days they are horrific, but it is all just a part of our tale!

Monday, June 25, 2012

Normal: Take 2

Normal. Normal? NORMAL! As you’ve probably guessed I’m
still trying to figure out this “normal” business and from my last post you’ve
probably also gathered that I’ve been trying to construct a reality that views
our life as normal. A few things have
happened over the last 10 days-ish though to challenge my assertion of our “normalness.”

For starters we were in Rochester
the night before my daughter’s surgery.
Swimming was first on her to-do list since it would be the last time she
would be able to swim for a long while (why is it she is always on a no
swimming restriction in the summer?)
and then we headed to Caribou Coffee.
The lady behind the counter asked very sweetly if the [large] coffee
drink was a special treat for Ry to which I responded no we’ve just learned
after so many surgeries that if she has a lot of caffeine she’ll be able to
stay up later and have that midnight snack before the no food or drink
restrictions go into effect. Maybe the
normal answer was just nah, we were just thirsty?

Then the day of Ryley’s surgery
we had the opportunity to meet with the anesthesiologist. The poor guy walked
in, sat down, and then proceeded to take
notes while I told him what protocol he needed to follow, what medications
to avoid, and even what form of sedation was best for her. Then I educated the
nurse on primary immune deficiencies, told her where to place the IV, and gave
them the IV covering that they needed to use because of Ry’s allergies. The poor people were in too much shock to
even argue with me over a-n-y-t-h-i-n-g. I
think the normal response when people walk in the room is to just say hi, or
how are you today, or something a little less procedural or medical than my
approach.

On a positive and very normal
note though Ryley came through the surgery remarkably well; she had an allergic
reaction to the tape used on her eyes but she kept breathing and even woke up
without hesitation when the time was right.
We are dealing with some post-surgery inflammation (and maybe even
infection) because the surgeon is refusing to acknowledge that her body may not
respond to his impeccable work like his thousands of other “normal” patients so
we’re on pins and needles until the packing comes out in another few weeks.

We checked out of the hotel only
to check back in several days later for Caden’s surgery. Same pre-surgery
routine—swimming and a meal of the child’s choice; Ryley picked a great buffet
while Caden went the McDonald’s- commercials-show- Pokemon- toys- in- their-
happy- meals –so- I- want- that route. Here’s our “normal” for you—ordering a
cheeseburger with no burger in the happy meal. Seriously the order taker’s response is priceless—you should try it
sometime even if you eat meat!

The next day, a few raised
eyebrows and a lot of questions later, we were able to hang out in a private
room in the pre and post-op recovery room with Elf the super service dog by
Caden’s side. Interestingly we drew the
surgeon we really didn’t want performing Caden’s procedure only to learn that
she was a huge dog fan and she spent some quality time on the floor loving on
Elf—it was seriously the most human we have ever seen the lady be. I’m not going to lie here—it is HARD walking
in places with the neon-flashing-look-at-us sign that is our service dog but
honestly having Caden’s “bestest” friend there before and after the surgery
made any less than “normal” responses we got totally and completely worth
it.

After a week like that one can
only hope for a nice relaxing normal
weekend. We did what every “normal” family does to relax—we packed up and
headed to the……………….. hospital for a bazillion hours of infusion (did you really think I was going to say
river or Disney there?). Of course we followed our usual ritual of “Old
McDonald’s” beforehand and as usual the McDonald’s staff stared us down with
Elf but never said anything. I’m sure one of these days they will but until then
we will keep killin’em with smiles, kindness, and a perfectly behaved super
service dog. At the hospital we had a new nurse for one of the kids and I *may*
have made the same mistake as noted on Ry’s surgery day—this became apparent when the nurse said so I’m just going to assume
that you know a lot more about this when we do and will tell us when we need to
do something. I should mention that I actually get along with the nurses on
the pediatric floor of our hospital really well for this precise reason—I let
them do their jobs and they defer to me when my expertise will help the kids. I
think the nurses also like us because we know how to pack to maximize our
children’s cooperation and we occasionally
take them food—usually chocolate. We
come armed with presents that the kids get after IVs are started (I’ve always admitted to the fact that we
use bribery whenever medically necessary), we take ipads, chargers, pillow
pets, blankets, cell phones, and whatever obsessions Caden has at the moment. Any sign
of normalacy is usually lost though when Caden pulls out his stopwatch to time
the charge nurse who is called to start his IVs—thankfully the weekend nursing
supervisor understands how much focusing on the numbers helps Caden handle the
IV and realizes that since we started the stopwatch Caden hasn’t needed anxiety
medications or to be held down for an IV start. Next month though he is on
vacation and I’m a little scared for the nurse who will be taking his place—I’m
pretty sure most patients don’t time IV starts or maybe they do?

I do have one bit of news to
report that every single “normal” parent out there can relate to. As you might recall the beloved airplane
landed on the roof and actually went up the roof instead of down with
wind and a few storms. After going all
the way up the roof and part way down on the other side, it became apparent
that the plane wasn’t going any farther than our gutter. So
drastic times call for drastic measures and a daring rescue mission and
a double extension ladder and mommy climbing really really high up the
ladder; when mommy couldn’t climb any higher the rescue mission then involved
mommy sticking her hand into unknown gunk and insects in the gutter. But at the
end of the battle of mommy versus the roof—mommy prevailed and I’m pleased to
report the airplane is safely back on the ground and in the family room with
Caden. Just another normal day,
right?

About Me

I’m Jenn and this blog is about my family and our journey with "medical mystery alphabet soup." Our tale wouldn't be complete without our super autism service dog, Elf, our rescued fur babies, and whatever else life throws at us. Bio? Step? Adopted? Who needs more labels, we're just family around here. Some days our stories adorable, some days they are horrific, but it is all just a part of our tale.

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